I’m 24 and just been diagnosed with deep pelvic endometriosis where it’s affecting my bowels, bladder and retracting my ovaries after being in pain for 18months after having my son. So I am currently out of work but UC are pushing me to find work. I am ringing the doctors for a sick note and to see if they can back date it for me.
Because of this I am unable to work as on bad days they are bad to the point I need to arrange for a family member to come and help me with my son, I struggle with day to day tasks and when the period starts well that just a different type of hell than any other.
I am on medication to stop the endometriosis progressing while I’m on a 6months or more waiting list for open surgery.
I am also looking for someone to talk to that is going through the same situation or similar as it is impacting my physical and mental health.
Thanks in advance.
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ACLParkes73015
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PIP is not an out of work benefit - you may be eligible but your condition must have affected you for the last 3 months and be likely to affect you for the next 9 months as well (so 1 year in total). You will need medical evidence confirmingDue to the chronic and repetitive nature of the condition, Endometriosis is classed as a disability under the Equality Act 2010.
Hey lovely, I get PIP for my mental health but have just been diagnosed with endo so will be informing them of this in case it means I’m entitled to more. I work part time and working doesn’t affect if you can have it or not, the condition just has to have lasted a certain amount of time and won’t be expected to improve for some time which endo would fit the criteria for. I hope this helps. It can be such a nightmare going through the process because you feel like they’re trying to trip you up and you have to prove how much you’re suffering but that extra money can be really helpful. Xxx
hi hun how's u doing? I'm sorry to hear that ur suffering, I've recently been awarded pip for endometriosis and understand what ur going through if u want to talk plz msg me xxx
Hiya, I’ve just started the application process for PIP, did you have a long wait? It’s so difficult to deal with all of it on top of pain, painkiller side effects, and day to day life… I’m shattered!
Hi, how are you?I’m getting there. Ive been put on provera for 90 days to stop my symptoms getting worse however their making me so bloated and sick. There’s a 6 month or longer waiting list for the operation due to Covid.
Ive tries paracetamol, ibprofen and co codamol and they don’t seem to work for the pain. My doctors are useless, I went to them in September they didn't sent the referral through to the gynaecologist till November even though I was going to them for months before this thinking it was a water infection. They just don’t seem to help me at all.
But I desperately need to try something for the pain and discomfort.
I was on that for 6mths it took my body 6 years to get back to normal I hope you don't have the horrible side effects from it? if u do & u fancy venting Im here xx😊 also if it helps at all cannabis is a fantastic pain killer, muscle relaxant, as well as anti inflammatory & anti sickness I can also suggest other ways of coping with the pain 😂 I'm becoming a master at it 😂 hope you find what you need xx
What side effects have you got? I feel sick, tired and bloated.
I’m only 24 and wanting to have another baby.But I can’t read anywhere about when I stop provera whether or not I could fall and have a successful pregnancy.
hun I really hope you do 😊 I had all the above along with excessive sweating, migraines and mood swings, I was also given hrt. they put me on it for 6mths it took my body 6 years before it was back to normal although I was given a few tips to help get back to normal and help conceive. I was trying to get pregnant pretty much as soon as I stopped the depo, I started taking folic acid immediately after stopping and was trying for 2 yrs, I'll be honest I gave up 😔 but one morning I decided that I would stop trying and just have fun with it 😂 3 mths later I found out I was pregnant and had a very healthy girl. if u want to stop just stop and notify your doctor ur trying to get pregnant (hopefully they will ease u off any hrt if ur on any 😂) do you currently have any children? I've had 3 my first had complications but the other two were healthy, all are great now xxx
I’ve currently got an 18 month old, it took me 2 and a half years to fall pregnant with him.
I’m supposed to be getting an operation in 6 months of more (due to the waiting list since Covid). But I’d love to fall
Pregnant before then. Hopefully the provera eases the symptoms so this is possible 😅
Yeah, I am currently getting the horrible symptoms of provera, terrible sweating, hot flushes, migraines, bloating and so tired all the time. My GP has prescribed naproxen for the pain and I’ve managed to get a full nights sleep 🙌🏼 Xx
I had a full hysterectomy three years ago and I’m still struggling with chronic pain, to the point that I can’t work either. I have just applied for PIP and waiting for the paperwork… it’s a long process from what I understand, but well worth giving it a go. I’d say you would definitely be eligible. Hope you’re doing ok, I can really empathise with the endo issues and the stress of not being able to work. Take care x
hi hun how's u doing? the NHS won't give me one but in all fairness I'm not sure if I'm fit for sugary? I weigh 42.5kg and struggle to stand for long periods of time or walk short distances, I actually applied for pip in 2016 and was denied, I then applied again Oct last year and was approved in January this year, as my Symptoms have only gotten worse since I applied in 2016 I'm entitled to an assessment for for mandatory backpay 😊 (wouldn't that be nice) 😂. but the whole process took around 3 mths and I was awarded backpay from the date I first applied.my partner is a company director and works from home, he is also my carer and has been awarded carer's allowance (also with backpay) the telephone assessment I found difficult and I believe I'm entitled to more (that I'm pursuing).
as for how I'm doing it's been a very difficult and very long wkend and my pain level is 8, I'm trembling violently, vomiting and can barely move, I have come close to calling an ambulance a few times in the early hrs 😔 I'm physically and emotionally exhausted but other than that I'm well, I hope you are well and have some relief xx
That’s so great that you’ve been approved now - I think the legislation around women’s health is slowly changing, which is tentatively encouraging.
So sorry to hear how ill you’ve been - you shouldn’t put up with that. You need to demand that they give you proper help… I always used to bring my mum to my appointments because I was too sick to talk about what was going on 🤷🏻♀️
I’ve just been sore and high on painkillers over the weekend, so I don’t remember much 😅
Hi hun! You are not alone. I’m going through similar struggles, I don’t have any kids but we are the same age and it’s hard trying to be the best version of yourself with endometriosis because it’s literally the forefront in your life. Try and speak to your GP regarding your mental state so they can refer you to someone local who can help you. Try and not think about work right now because your mental and physical state is more important. Take this time to find the best painkillers and therapist so you can have a clear mind when looking for work.
I know it’s easier said than done and I should really take my own advice but you’ve got this x
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